Possible risk factors

Age: people diagnosed with frontotemporal dementia tend to be under the age of 65.

Gender: affects both men and women.

Genetics: in about a third of people frontotemporal dementia maybe genetic.

Preventing frontotemporal dementia

Frontotemporal dementia research is still in its infancy. At this point in time we haven’t identified anything that can prevent frontotemporal dementia as the risk factors are inherently unavoidable. It’s not fully understood why abnormal proteins build up, but there is often a genetic link.

Try to monitor your food and fluid intake as there can be weight gain due to excessive eating and a fixation with sweet, calorific foods.

If you experience language difficulties, ask the GP for a Speech and Language Therapist referral so new ways of communicating can be explored.

For the family carer

Remember that the changes in personality, inappropriate social behavior and apathy are due to the condition and are not intentional.

As the person affected may not have insight into the changes experienced, trying to ‘correct’ the person’s behaviour could be resisted and could lead to arguments.

The family may need specialist advice and support to come to terms with and manage the changes experienced.

A specialist practitioner such as an Admiral Nurse could also help the family develop strategies for dealing with the changes experienced.

Planning ahead if you have received a diagnosis

Talk to your family and the people close to you about the future. Think about what help you would like.

You may also like to think about things you would really like to do, people you would like to meet, holidays you would like to plan. Having some plans in place helps with a positive outlook on the future and opens up conversations with people who care about you and would like to support you.

Thinking about your future health needs can be difficult and feel like an unnecessary step but it will help you and the people who know you well to choose treatments and services that you would prefer in the future. You can put a Health and Welfare Power of Attorney in place and an Advance Care Plan. Putting these things in place will give you and your family time to look at treatments and support that is available and make sure you are aware of all the choices that are available to you for the future.

Gaining some financial advice as soon as you can will help you get your finances in order and make sure your finances are protected. A Lasting Power of Attorney is an important safeguard for you and anybody who is helping you with your finances. It is best to get support from a solicitor or an organisation like Age UK to help you with this.

Financial support is available to you regardless of you financial status. You can claim for Attendance Allowance (which is non-means tested) if you are over 65 years or Personal Independence Payment if you are under 65 years. If you live with another person you can also claim a 25% council tax reduction from your local authority.

There are a variety of housing options to choose from. If you are renting you can get support from you local authority housing department. There are also choices of housing in the assisted living and sheltered housing options.

Support

If you suspect you have frontotemporal dementia, make an appointment with a GP so they can ask you questions about your concerns, and perform a physical examination to rule out any other potentially treatable conditions that could give similar symptoms e.g. infections, side effects of medication.

If your GP suspects frontotemporal dementia they will make a referral to a memory clinic or other specialist clinic for further tests and diagnosis.

Research

Over the last couple of years more money has been pledged by the UK government and other countries world wide to research into the causes and find a cure for dementia. Subject to research processes and certain criteria, there are opportunities to be part of a research studies. To find out more or register your interest, see: Join Dementia Research